There are three basic ways to help. First, you can assist in the quest to identify all of the estimated 20,000 individuals in the U.S. with Usher Syndrome. If you are aware of someone who has been diagnosed with Usher Syndrome you can encourage him or her to seek genetic testing through their physician.
The second is by joining the Usher Syndrome Coalition. This is an international Usher advocacy group led by families affected with Usher Syndrome and scientists who are working to cure it. All families personally touched by Usher Syndrome would benefit from joining this great organization.
The third way is by contributing to the Project Usher Fund and/or the William Kimberling Usher Research Laboratory. These very low overhead funds, managed by the University of Iowa Foundation and the Carver Nonprofit Genetic Testing Laboratory, were specifically created to facilitate genetic testing of individuals with Usher Syndrome and research designed to develop treatment for this disease.